Lessons on End-of-Life Care From a Sister’s Death

Courtesy of The New York Times.com | By Paula Span | Photo by Juliette Borda | Originally Published 05.26.2015 | Posted 04.23.2018

The health care professionals entering my sister’s hospital room, or answering my questions in the corridor, had perfected a polite method of ascertaining whether I was entitled to information about her condition.

Nobody demanded, “Who the heck are you, and will I get canned for a Hipaa violation if I talk to you?” Nurses and physicians who hadn’t met me just asked, “Are you family?”

“I’m her sister and her health care proxy,” I would say. That was sufficient; we went on to discuss test results or her morphine dose.

The New Old Age, a blog for six years and now a twice-monthly column, has often considered end-of-life care. It is inescapably part of the conversation about aging and caregiving, though lots of seniors, families and professionals prefer to avoid the subject as long as possible.

But as with almost anything, one discovers at least as much from personal experience as from interviewing experts and reading studies.

My sister Debra was the third family member I have accompanied, with as much dignity and comfort as we could arrange, through her last days.

She was 62 when she died last month of a progressive neurological disease in a New Jersey hospital. I thought I would pass along some personal lessons.

1. Nobody Asks to See Your Advance Directives

When Deb was admitted to the hospital, for what initially seemed a treatable problem, she hadn’t brought her advance directives, which appoint a person to make decisions should the patient become incapacitated, and give someone power of attorney. Few people do remember to bring them.

But she had always told me and others that I was her proxy. Early in her stay, she signed the hospital forms designating me her primary family contact and authorizing the “disclosure of protected health information.”

Two weeks later, as it became clear that Deb was declining rapidly and unlikely to recover, I obtained copies of her directives from her lawyer’s office; the originals later turned up in her safe deposit box. (Neither is the best place to store such documents, which should be readily accessible, with copies distributed to family members.)

At that point I learned, though Deb herself had apparently forgotten, that when she signed these papers in 2008, she had actually designated a cousin as her proxy, not me. This didn’t cause family strife, but it could have generated lots of additional faxes and phone calls to Pennsylvania, where this cousin lived, had Deb not signed the hospital forms. As her most recent designee, I was allowed to act on her behalf.

The kicker: None of this seemed to matter. As far as I can tell, no medical professional looked at any of these documents. Certainly, nobody ever asked to see them.

Two years earlier, in a hospital emergency room on what proved to be my father’s last night, it was the same story. I had his documents with me, ready to thrust toward anybody who might question my role, but I never needed them.

I was there. I said I was his daughter. That’s what counted.

As Dr. Rebecca Aslakson, a critical care anesthesiologist at Johns Hopkins Hospital, once told me in an interview, “When catastrophe happens, the hospital doesn’t call your lawyer. It calls your family.”

2. We Should Have Advance Directives Anyway

The more crucial function of advance directives may be to instruct the family, to tell the people who will make decisions for you what you want and, as important, what you don’t want.

In my family, hospice has proved a familiar and valued service. A South Jersey hospice cared for my mother with knowledge and compassion, allowing her to die at home in 1998. Almost ever since, my sister had been a hospice volunteer. I knew she would not want a lingering, overmedicalized death.

But when you are sitting with a hospice intake nurse and your sister’s 25-year-old son, who of course knows little about palliative care, it’s enormously helpful to have this piece of paper. (It is even more essential for ailing people without close family.)

Deb could not speak much or direct her own care by this point. But her directive spoke for her: If life-sustaining procedures would “prolong an imminent dying process,” or if their burdens “may reasonably be judged to outweigh the likely benefits,” they should be withdrawn so that she would be “permitted to die naturally.”

She carefully included examples, including the “mechanical provisions of nourishment or water.”

This was a sorrowful, sobering moment; nothing could make it less so. But to have her own wishes so clearly specified lifted a great weight off our collective shoulders. We knew what to do, because she had told us.

3. Hospice Remains Invaluable

As hospice has evolved — what was largely a nonprofit, grass-roots effort is now dominated by for-profit chains — researchers and journalists have questioned aspects of its operation.

Hospice clearly reduces aggressive care at the end of life, and it allows more people to die at home. But does it save Medicare money, as supporters have long argued? Last year, a large study of cancer patients showed that it did; a recent study of nursing home patients came to the opposite conclusion.

More stringent federal auditing has forced some patients off hospice rolls, at least temporarily, when they are not declining quickly or measurably enough. That leaves families and patients feeling abandoned.

But hospice staffers remain the specialists in end-of-life care. When we enrolled my sister in a nonprofit hospice, the same one she had served at as a volunteer, we needed all their expertise.

Hers was not the gauzy, sweet farewell we all hope for. Deb developed severe pain and required increasing doses of intravenous drugs to keep her comfortable. Hospice nurses came to the hospital twice a day to see her, adjust her meds and revise orders. We could call them around the clock.

Almost everybody would prefer to die at home, but not everyone comfortably can. I don’t know how to insert IVs or titrate meds; we amateurs could never have handled this alone.

Medical personnel often respond with appreciation, I have found, when you sign the do-not-resuscitate form and tell them your family member is transitioning to comfort care. They know medicine’s limitations and seem relieved that you don’t demand miracles or expect them to provide invasive, ultimately futile care.

The hospital moved Deb’s roommate out, leaving us with a private room. We shut off the TV and turned down the lights; my cousin brought ethereal-sounding CDs to play. The nurses and the hospice staff came and went while my family and I sat quietly with my sister until the end came.

Hospice gave us support and counsel, and gave Deb a peaceful death. No other cog in the health care system performs this service or is designed to. Hospice may need changes and improvements, but I don’t want to contemplate where we would have been without it, and we are nothing but grateful.

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